Archives for June 2017

Lucia has been wearing compression garments to help treat her lymphoedema for three years now. We took that giant step when she was just two years old – and it really was a giant step as we knew once we started there was no going back.

Since then she has worn her garments pretty much all day everyday apart from a few days here and there when she has been ill. We are now also learning how to compromise with her on sunny days when it is too warm to wear them all the time, or on the days where she just can’t bear being heaved into them.

Juzo Expert

We have used two different companies over the years but for the last year we have been using the Juzo Expert range – and so far we have been really happy with them. Lucia finds them comfortable, they fit well, they look good (for compression!), they can be washed in a washing machine (not a fan of hand washing here!), can dry overnight and there is a decent choice of colours. She was able to get red, ‘Cosmic Coral’, to match her uniform – see here for more info – and the colour ‘Sugar’ is a lovely off-white which looks good with dresses, so we have been delighted with those. I’d love to see more pastel type colours available for the summer months though, maybe even a little polka dot or stripe, but I don’t know if that’s possible. I have emailed them to ask!

Anyway, a couple of posts ago I had mentioned Lucia going through quite a bad patch with her swelling. You can read more about this here. Her right foot, toes, ankle and leg were really holding onto a lot of fluid and extra treatments didn’t seem to be helping. Thankfully, in the last few weeks things have settled again, but following that ‘down’ period her therapist, Lynne, suggested trying a slightly different type of compression.

New compression combination

Instead of the closed toe tights that she currently wears, why not try keeping the left foot closed toe, but the right foot open toe and wearing toe caps over the top of the open toe all day, to see if that would help. The photo below probably makes this easier to understand. I know many adults wear toe caps all day everyday but we had been using Lucia’s toe caps, or toe gloves as she calls them, more as a ‘treatment’ at the end of the day when she was particularly puffy.

Again this was another big step. We weren’t sure if Lucia would be able to tolerate wearing the toe glove all day, how comfortable it would be for her, whether the open toe part of the tights would pop out of position, how it would work with one open toe and one closed toe, how would she manage having a double layer of compression on her foot, would her shoes still fit, would the tips of her toes rub on her shoes causing blisters that would lead to infection…many what ifs! But we decided it was something worth trying.

And we are so glad we did. To be honest, when I put it on for the first time I felt scared and really sad because it looked so ‘medical’. At least the tights looked like tights, but to me this very much screamed ‘there is something wrong with me and I have to wear this weird looking thing on my foot’. And I never want Lucia to feel like that. But of course, she didn’t feel like that. She’s only five, this is her normal and it was just a bit of variation on what she has always worn.

So the first day we tried it for just a few hours to see if she would be comfortable and she managed great. And when we took the new garments off, her little toes, foot and ankle looked amazing. The compression had worked so well, her toes were much less swollen, the top of her foot was reduced in size and her ankle had a little shape to it. Wow.

After a couple of days of wearing this for a few hours at a time, she then wore it to school meaning she had the combination on for about six hours in total. She came out of school limping saying the sole of her foot was sore. We aren’t sure why as she had no marks and no rubbing but she was relieved to get them off that day.

However, that was a few weeks ago and since then we have built up the time she was wearing them and she can now manage full days. I have to say, this combination works much better than the fully enclosed tights, particularly for her toes, foot and ankle. She doesn’t wear them everyday, she still likes to wear the closed toe tights as well so we try and let her decide which she wants to wear each morning. It is important that she feels she has this control and the choice each day as she is the one having to wear them. Ideally though, I think we will try to build up to wearing the new combo most days because the results are superb.

Peace of mind

I should say here that the fluid obviously pools back in again overnight but knowing that these garments are helping to keep the fluid moving well is invaluable as this is the whole point. Knowing the fluid isn’t sitting in her legs and feet stagnating with bad bacterias and proteins which can lead to infection and progression definitely helps give a little peace of mind each day.

Last night I thought my heart was going to burst with pride. The dance school that Lucia attends was holding its Annual Show and her class – the babies class – was doing a little part to show all the parents, grandparents and aunts and uncles some of the ballet moves they have been learning over the last year.

Lucia had been so so excited all week and counting down the sleeps until the show, so come Thursday she was beside herself! After an early tea (that was eaten by both Max and Lucia in record time!) we started to get her dressed into her ballet clothes for the show – a purple leotard, purple skirt and ballet shoes with a pair of peach socks.

Socks dilemma

As you can imagine the whole socks issue had been playing on my mind a bit as Lucia always wears her compression garments to ballet. Her lovely teacher had suggested she wore her skin coloured tights with the socks over the top, but this wouldn’t have worked because we would never have been able to get her ballet shoes on. So we decided to let her just wear the socks. It was an evening performance, she had worn her garments all day, it was only for a short period of time and Lucia wanted to be just the same as all her fellow ballerinas.

When we told her she could wear the socks without her tights she actually squealed with delight. She ran up and down the house shouting ‘no tights no tights’ and told me I was the best mummy in the world as she squeezed me in a huge hug. And when I got her all dressed she actually said, ‘it’s so lovely to have my legs out!’ as she twirled and skipped about. It is little moments like this that make my heart happy and sad at the same time – how something so completely normal and insignificant to anyone else can mean absolutely everything to our little girl.

I then got the all important hair sorted with a ton of mousse, clips and hairspray and we were good to go!

The show

The show was being held in the local Town Hall and when we arrived Lucia was so excited to see the stage and couldn’t wait to get on and do her bit! But she had to wait! We watched lots of the older dancers doing their pieces first and Lucia couldn’t take her eyes off them – but between each act kept asking is it my turn now, how much longer, how many more…until finally, it was the babies turn.

Watching her run onto that stage on her tip toes with a beaming smile on her face had me fit to burst with pride and tears! Our girl was so happy. When I think back to all of the uncertainty when she was a baby – not knowing if she would be able to walk never mind run or dance – and now we were watching her dancing on a stage!

On stage

She pointed her toes, she jumped, she plied, she skipped and was the most beautiful, joyful ballerina ever. And we were all the proudest mummy, daddy, brother, grandparents, aunt and uncle ever! When she came off stage we couldn’t wait to cuddle her and Max said she was the best ballerina he had ever seen (best big brother ever!).

Exhaustion and recovery

After it was all over and the adrenalin wore off she was completely exhausted and was asleep in seconds when we got home. This morning she was still extremely tired – but thankfully it’s Friday so she only had one day of school to go and she couldn’t wait to tell her teachers all about her night!

When I collected her from school her assistant told me that Lucia had been too tired to do PE so she just sat and watched her class as they practised for Sports Day. Although she was only on stage for about 10 minutes, the whole experience clearly took a lot out of her and it is wonderful that the school take on board how she is feeling.

Now for a quiet few days to help her recover, though we have a very important football match to watch first starring Max – super proud mummy alert once again!

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More